By | March 10, 2021

Lisha Aquino Rooney's parent perspective at the Cultural Inclusion Conference 2021

Lisha shares personal stories of her son, who is autistic, experiencing art and from this provides advice to museums and galleries on how to be more welcoming to people with autism.

The conference on the 26th February 2021, brought together disabled people, parents, disability organisations, schools and arts and culture organisations to explore access to culture and heritage. Given the events of the previous 12 months the conference also explored: How has COVID affected opportunities for the inclusion of disabled young people in arts & culture?

  • See Lisha's pre-conference blog here
  • See Lisha's Letter to the Editor of Disability Arts Online here
  • See the slides from this presentation here

Lisha is an artist and autistic rights advocate, particularly within the arts realm. She is CEO of WhatDo, a clothing company celebrating autistic individuals and neurodiversity; ambassador for Flute Theatre, a theatre company which performs the works of Shakespeare to audiences primarily composed of people who could not ordinarily access the performing arts, including autistic individuals and their families; and governor at Queensmill School, a school for autistic children rated Outstanding in all aspects by Ofsted.


See the conference programme and all speaker biogs here

An audio description of Lisha Aquino Rooney's presentation

Full transcript

Audio description: A woman with long brown hair pushed back behind her ears is facing the camera with her head and shoulders visible. She is wearing a black blouse with small white buttons on the collar. Behind her is a plain grey wall. This presentation uses Power Point slides which are available on this web page.

Begins.

So welcome everyone and thanks very much for joining today to discuss cultural inclusion. I'm going to jump right in because I have quite a lot to go through and hopefully we'll get through it all.

So, this is my background, and this is just a glimpse, and as far as the autistic rights advocate that's primarily within the Arts realm. You'll see as the presentation goes on that we're very big art fans. Being Ambassador of Flute theatre, again, I think you'll hear about them a bit later, maybe from John Lyon's. As an ambassador I aware of everything that they do and since the pandemic I think they've made about 350 performances and they're working with families who were the most affected, particularly during these Covid times, that includes ourselves. They've just received some funding from the UN for a project in Peru and it's affecting the most poverty-stricken ones that are autistic I think some down syndrome children as well and ones that have suffered again from Covid. And I'm a Governor at Queensmill School, of the most amazing schools in the World, not that I'm biased and I think you'll hear from Freddie who's the headteacher on the panel later. And finally CEO of What Do which is a clothing company, we are launching in April which actually celebrates diversity, celebrates neurodiversity, celebrates autism.

So this is about viewing and creating art and all the positive attributes that it brings. Particularly for autistic children and neurodiverse individuals. I think the most important things are expression. There aren't a lot of ways that they are able to express, especially non-verbal children like my autistic son who you see here, touching some art and also the visual learning.

I think people overlook how certain people learn and I think a lot of autistic individuals do tend to be visual learners. I'm a visual learner. I do need graphics. I do need colour, I do need some sort of detail besides just the verbal and the oral or I just can't comprehend.

And also the multiple interpretations, I think the beautiful thing about art is there is no single interpretation. So they're not going to get it wrong, if children are standing in front of a piece of are there is no right. There is no wrong. There's just their own interpretation.

(Slide showing photographs of a child interacting with art.) This is like the wedding videos that people show you, or the holiday videos that everyone gets bored with, but hopefully you won't get bored. These are all my son, Lumen. This is all over lockdown because the indoor art venues were closed we made a point to go outside and see some art. And we're avid art goers, my older son as well, he's 13, and I just want to tell you about my love of art and why I think it's so important to expose Lumen and to expose all neuro diverse individuals.

My love of art is really its ability to make us contemplate. It's a possibility. It's a recourse. It's a companion with an ability to affect change, and I've strived to make them aware that is one of the things that won't fail him. If nature fails him, if humans misunderstand him, judge him, for any differences, if they disappoint him. If there are no consolation, no relief in anything else that he can always have art. He can have the conversation that he wants on his terms without anyone inflicting their expectations, least of all cultural institutions.

And during our outdoor adventures I quickly learnt that we were having so many positive experiences, compared to those indoors that I thought some indoor venues can learn from this. (Slide showing an indoor art installation.) This is just an example, people may recognise this. This is within Tate Modern it's Cildo Meireles, his Babel Tower and I think the reason that Lumen likes this room is that it's quite dim, there are some sort of white noise coming from these old radios.

And we need to create something touchable. I think, in our experience going outside you can see that first image Lumen was able to touch things, we were walking through structures within garden squares. He could walk through them, he could touch them, and I think this is missing. Museums are missing a huge opportunity and not just museums all cultural institutions. Touch. There's a huge lack of focus on that sense within cultural institutions.

So, these are just suggestions, but maybe without - you know, I'm an art purist myself, I don't want anything that's going to ruin the actual installation, but just to have something like this on the side that they can actually touch. I think will be more engaging for them and will just make the experience so much better and not just neuro diverse or autistic individuals, but everyone.

(Slide showing an art work and an iPad.) This is just another example. There's a Hockney exhibition coming up at the Royal Academy, I think when museums and galleries open again, and he's created these pieces on an iPad and so what I thought the Royal Academy might do is include some iPads. I know a lot of students at Lumen's school are familiar with iPads. I know a lot of autistic friends that we have are familiar with their tablets. Just to have, again, something to touch on the side, another suggestion.

This was very important that we learnt during or outdoor art adventures. We were able to find alcoves, we were able to find quiet corners. We went to see Ai Weiwei, which was in Piccadilly Square, which is quite loud. Lots of traffic, lots of pedestrians. And we managed to sort of recess into own alcove, we could see the bright lights, we could see everything but we were safe, we were in our own safe space.

And I think this is a very important thing for cultural institutions to try and implement. Those that aren't now, they need to offer some sort of space where children can resort to, and adults can resort to. Where they're going to feel safe. They're going to feel like they're not amongst all the traffic or not amongst too many trying to climb through too many installations or work their way around places where they can't stay for too long.

(Slide showing a floor plan.) I think it's very important to offer this sort of space. So this is just a mock up. This is a Tate Modern map that's already available, but I've just put on there my suggestions for some safe spaces and they don't have to be fancy. They don't have to be a sensory room. It's just an unused room, a small even closet space, a corner of a cloakroom anything that will give them some respite. Just a chance to sit down, regroup and be away from everyone else. This is just an idea and also to indicate where the toilets are that have no hand dryers. And also where there might be, I think I'm being very very optimistic, but where there might be some ear defenders available at desks.

(Slide showing a sensory map) And this is just a brilliant example. This is one of the most brilliant safe space maps I've seen. This is the Royal Academy sensory map and in it they've included so many fantastic things that are relevant to parents and carers of autistic individuals and and artistic individuals themselves.

It shows the bright areas, the dark areas, the quiet spaces, the noisy spaces, lets you know where there are toilets accessible without the hand dryers, lets you know that there's a difference in the flooring, in the pattern, in the colour. It even tells you that in some of the toilets those metal that reflects light if that's going to bother you from a sensory perspective. Just perfect, and all the events that they offer that are geared towards neurodiverse families.

So this sticks in my craw because we've been kicked out of galleries and we've been told that we're not allowed to do this, not allowed to do that and it's extremely frustrating and I think that the education for cultural inclusion needs to start from the very very top and it needs to filter down.

I mean, as a Governor at Queensmill, Freddie Udu the headteacher is the most amazing human being because how he stands, he makes sure that everyone stands in the same place. Everyone has a similar understanding, everyone adopts similar codes of conduct and empathy and it just filters down and you can see it and absolutely no reason why a lot of these cultural institutions shouldn't be doing the same.

(Two videos showing a child reacting excitedly to art) These are actually videos.

These are just to show that I'd never apologise for my son's reaction to art and I never feel embarrassed. I always feel like it's part of normalising these sort of reactions and interpretations. And I know I'm his mother but every time I see these videos it just makes me very happy, it just makes me see him engaged and quite a sad thing is that when we have been in galleries, when the staff, particularly invigilators, have seen him react like this they either get scared or they get angry and I'm not understanding either of these reactions.

There's nothing to be scared of someone jumping and flapping and spinning you should actually feel very happy that they're responding and at they're reacting in such a way. So when Lumen does this I never make any effort stop him, I in fact encourage any sort of reaction he has because I think it's beautiful.

So providing social stories for every single exhibition, and I know that Claire Madge from Autism in Museums is speaking later. And I'm absolutely sure that she's had a huge hand and all the museums that are now providing social stories. My son personally doesn't follow them, but we do pull out the images and show him what he may see and what he may see along the way, trees, dogs, people, taxis, buses, anything to familiarise himself with the route there and then when we get there.

This particular social story I love because it was created by - they're all verbal, young adults, they're all autistic and the project is called Social Story Spectrum Project. It brought together these individuals, I think they went to seven museums, they're able to practice their social skills and they actually wrote these so it's from their perspective which I think is extremely important rather than us trying to figure out what we think might be the issues that are most relevant to them. They did it themselves and shared it, so I think we can be doing more about here.

(Slide showing badges and ear defenders) Yes, so in our outdoor adventures I think that some indoor venues might be able to adopt some of these. Obviously we don't know what's going to happen with wearing masks, but I think it's important to offer some sort of badge or sticker because I know my son will get stares. I know other individuals will get stares if they don't have a mask on indoors, when they should and rather than people look at them and get upset, I think this is just a way of communicating taken straight from transport for London, their idea of writing a badge.

And then this is just a mocked up version of some ear defenders. These are £5 or less. I think all cultural institutions, there's absolutely no reason why they shouldn't be offering these and giving them away. Slapping their branding on and I think it's shameful, there are some cultural institutions that offer, maybe two, that they have behind a desk out of possibly visitors a day and it's not acceptable to me.

First of all I don't think that anyone knows they are available and if you give something like this I just think that the loyalty increases and also you're just showing empathy to visitors and in turn they are showing you that they appreciate it.

Yes, and this is my main point of contention, allowing more than a few hours, once a month for autistic visitors. When we were going outside we could go whenever we wanted and I knew the times when there would be less visitors. I knew the times it wouldn't be so bright outside, there wouldn't be a lot of traffic and so, we showed up during these times and just made it more relevant to me that we're not getting enough from indoor venues.

Early in the morning, 8am, is not the ideal time and it basically makes me feel like the squeezing us in before they have a chance to make money from the rest of the visitors and if they know anything about autism they know that there's a sleep deficit there are a lot of sleepless nights and having to show up at 8am just to have some quiet and just have less visitors isn't enough for us.

Last one because I know I'm running over. Yes, this is very important. I think that it's not a matter of shaming institutions, but it is a matter of letting them know if you're not being inclusive you're actively excluding and just ignoring inclusivity is not going to make it go away. It will always be here until the end of humanity and by not being inclusive you're telling individuals that they're just not worth it which, we all know, it's not fair and I don't think it's legal under some doctrines. There are always ways to re-budget there always ways to reallocate funds and resources, it's just a matter of getting creative and it can be done.

And, lastly a commercial perspective is not the only perspective.

So, thanks everyone and if there's any Q&As later I'll answer them. If not here are my details and you can message me privately.

Thank you.

Ends.